Two weeks before I was hospitalized and began the fight of my life.
I admit I hate my body. I hate that it fights with itself, I hate that is destroys platelets and my joints. I hate the way I look after almost eight months of heavy steroids. I can’t fit into my clothing, I feel disgusting and I’m ashamed of what has happened because of those evil white pills. I lost every sense of my ‘healthy’ self, and the process of getting back to where I use to be is extremely slow. Continue reading
I want to congratulate the following people on winning a signed copy of How To Heal A Bruise!
@Marilia_lia18
@missplaquetas
@MissesSuit
Thank you to everyone for posting your ITP Awareness Day photos! Remember that awareness and advocacy is important every day of the year.
A wonderful platelet pal, the owner of ITPandMe.com has published a book! I am so excited to be giving away three signed copies of the book.
Rules:
Contest begins on Wednesday, September 23, 2015 at 11am EST.
Three (3) people will be selected to win a signed copy of How To Heal A Bruise by sharing a social media campaign message to raise awareness of ITP.
#ITPAware day, Sept 25! Check out How To Heal A Bruise: http://itpandme.com/itp-awareness-day-coming-soon/ #raredisease @RareCandace @meghan_brewster
**Make sure you put Meg & I in the tweets so I can see them!**
Also, I will accept bonus submissions if you tweet using #ITPAware and link to How To Heal A Bruise on Amazon!
BUT WAIT!
Take a photo holding a sign discussing life with ITP, the 21st Century Cures Initiative or how much you hate Prednisone and you will receive TWO (2) bonus entries!
Note: you’re giving me consent to use your photo on social media to continue to raise awareness about ITP. Get creative and have fun! Make sure you tag me on Instagram and Twitter: @RareCandace
Winners will be announced Thursday, October 1st at 5pm EST (if I am late, forgive me as law school and my new autoimmune issues have been kicking my butt lately).
In the last few months as I slowly get to know professors and administrators in my school, I have noticed a trend. I wouldn’t say it is an academic thing, or law school related, rather it is just ignorance. When I express my motivation (or insanity) behind deciding to go to law school such a short time after being diagnosed with my rare disease, I’m met with a strange reaction. Everyone says the same thing except in different ways. It boils down to, be passionate but focus on your studies. Continue reading
With two weeks of law school completed, I am physically drained. It isn’t due to the work, I have worked longer and harder hours doing physical and mental labor that was nothing short of torture at times. The difference now is my health. I cannot sustain myself for extended periods of time because my body has to try and fight off germs from the hundreds of people I encounter at close proximity every day. I almost exploded this week because people can’t respect personal space and therefore were making me worry that I might become sick. Up with a scratchy throat at 8am on a Saturday, I’m afraid that my concerns were justified. Continue reading
September is ITP awareness month, so it is only fitting to start off with a list of the things that I have come to discover about life with low platelets. It has been a challenging, difficult and frustrating journey. However, I would be lying if I said I wasn’t a better person because of it. Continue reading
I can’t believe the amount of pain I have been in recently. It travels around my body from my knees to my shoulders and back to my ankles. I knew something was wrong so I went to see my doctors and explained my symptoms. The pain on a scale from 1-10 is about 6.5 to 7 so I needed to be proactive.
What do you say when you meet a hero? Do you thank them? Do you ponder how they achieved greatness? In the case of Noah Coughlan, how do you express your gratitude for sacrificing so much to advocate for rare diseases? I still don’t have the answers to any of those questions. Continue reading
It seems we spend more time in the waiting room than actually interacting with our doctors. That’s why as patients we must consolidate as much information as possible and leave out unnecessary details. Given the prevalence of health data trackers like Fitbit and Jawbone, it is critical that we focus on important symptoms and side effects. Continue reading
It’s time to turn up the heat, we need the Senate to match the same sense of urgency that the House has. The OPEN Act was introduced to get the Senate’s attention.